Wednesday, September 28, 2011

Our hospital days are made up of lots of moments: silly, sad, happy, frustrating, sick, tired, funny and everything in between. Two year old tantrums while hooked up to IV chemo 24 hours a day take the terrible twos to a whole new level. I thought maybe she would get a "free pass" from the terrible twos, but I guess I should just be grateful she can have a fit, right?

Content happy moments are fleeting while in the hospital so I have to act fast and take a picture. This morning we had one of those moments before she launched into a 'get outta bed and go home' moment.

I really think this picture is a symbol of Clara's determination, hope and sweetness.

We had a quick video chat with the kids and Brian before they left for school this morning. Just before we were ready to disconnect, Chandler said, "Give me a hug, Clara!" And she grabbed the iPad and hugged it. Cutest thing ever! Moments like that drown out those 2 year old tantrums. I am grateful for those moments.

*Clara is almost 48 hours into the 72 hour chemo course of the SIXTH round of chemo she has had in the last 4 months. If she is eating and drinking enough to satisfy the doctor, she will be discharged on Friday. We have to stick around here since her counts will drop, and hope she can avoid the fierceness of mucositis and fevers that she had after round 4. On October 12th and 13th she will have the barrage of tests she had at the beginning to see if/where the cancer is still active. If there isn't any new growth she will be ready to head to Seattle for stem cell transplant. Lots of things on the horizon! Thank you again for your prayers and faith. The speedy recovery she had from surgery was a MIRACLE, and we know she will be blessed with more. He is a God of miracles and we know that.

Sunday, September 25, 2011

Tomorrow Clara begins round 6 of chemotherapy. She will receive the same drugs for this round as she did for round 4 and the side effects are awful. After 4 days in the hospital she will likely get out of the hospital for a day or two. Then she will spike a fever and be readmitted for 10 days, battling fevers, headaches, and the heart-wrenching mucositis, which coats her entire digestive tract in sores, making it impossible for her to eat, or even swallow. She will most likely contract c.diff, which will put her in isolation for a week and prevent her from leaving her room. I tear up just thinking about what is in store for her.

The physical pain of the whole ordeal is only a part of it. Cancer is so emotionally and psychologically draining, both for the patient and for the caretakers. There is nothing I can even compare it to. What compounds the stress is the frustration that comes from knowing Clara has already been through so much and the treatments really have not had much of an impact on her cancer. The pathology report from her surgery simply said "treated, but viable" meaning that the tumor segments which were removed showed signs of being treated, but were still alive and well. Have you ever had the wind knocked out of you? That's kind of what it feels like every time we meet with the doctors to get more bad news.

The next step after this round of chemo is to go to Seattle for a stem cell transplant, which will likely take 6-8 weeks. That will be followed by a month of radiation and seven months of immunotherapy, which one nurse described as so much worse than chemo. We have been researching alternative therapies, in hopes that we can find something that will offer Clara a better chance of survival without the horrible side effects of the traditional treatment. Sounds too good to be true, right? Clara's original diagnosis left her with a 10-15% chance of survival, based on the research we did. There has got to be a better way.

Natasha and I are both well aware that we may come to a point in Clara's treatment when we need to step back and evaluate whether or not to continue. How much can you watch your tiny child suffer before you say enough and allow her to return home to God who gave her life? Eternally, we will be reunited, but the decision to let go is beyond my personal capacity right now. In spite of the anxiety we feel, when all is quiet and I have time to ponder, I still feel the calm reassurance that everything will eventually be okay.

Tuesday, September 20, 2011

Dr Thorne came in this morning and told us that Clara can leave as soon as she eats two consecutive meals. Based on recent history, that could mean we will be here forever. In the last 24 hours she has eaten 1/4 of an apple, a few pieces of candy, and not much else. Some diet, huh?

We have been so blessed by the many hundreds of people who have fasted and prayed for Clara and our family during the past four months. I know the prayers and faith of many of you are responsible for Clara's smooth surgery and rapid recovery. There is no scientific or medical explanation for how well the past five days have gone. Thank you.

So many times we hear people apologize because all they can do is pray. Last week I was talking to a man I do business with. He said something that was profoundly insightful. He said, "I will pray for Clara. It's the most I can do."

Behold, I say unto you that whoso believeth in Christ, doubting nothing, whatsoever he shall ask the Father in the name of Christ it shall be granted him; and this promise is unto all, even unto the ends of the earth.

Sunday, September 18, 2011

Clara was released from the PICU this afternoon and brought back to the pediatric oncology department that has been her home for most of the last four months. While it is nice to see her making progress towards healing from her surgery, it sure was nice to have the extra attention in the PICU. One nurse for every two patients is a luxury over there.

Clara started eating today, though she doesn't have much of an appetite. She also ventured out of bed for about an hour. Part of that was spent in the wagon, and part on the plasma scooter. She definitely hasn't lost her spunk.

We still don't know much about the mass that was removed from her abdomen. The surgeon said some of it was calcified, but we won't know until the pathology report comes back how much of the tumor was "dead" from Clara's chemotherapy treatments. For now we are just focusing on healing and keeping Clara comfortable. Hopefully we can take her home later this week for a while before her next hospitalization.

Thursday, September 15, 2011

For those not aware, Clara's tumor resection that was scheduled for last Wednesday was rescheduled for today because her blood counts were too low. As always, the bump in the road proved to be a blessing as Clara was able to go home for a few days. It was a sweet escape!

Today was the day we had been anticipating for nearly four months as it was one of those milestones along the path to Clara getting better. Knowing that the tumor had not shrunk any since the initial scans the hope was that the surgeons would be able to remove as much as they safely could. After 5 hours of surgery, the surgeons were able, as far as they could tell, remove 95-99% of the tumor. It was a very delicate surgery involving many blood vessels, main arteries and vital organs. Quite miraculously she only lost 5-10 cc's of blood! We are anxious to hear the pathology report to learn the make-up of the removed tumor tissue.

We have been through a similar experience with Carson when his brain tumor was removed. For the most part Carson's tumor resection was the end. With Clara it is just the end of the first phase of her treatment. She has many hurdles yet to overcome, but as we saw today and have seen many times before in these past 4 months she strengthened and protected in her afflictions. The peace and comfort Brian and I felt today was remarkable. We know the prayers of others petitioning our Father in Heaven on our behalf lifted us today. And without a doubt guided the doctors throughout surgery. We trust He will continue to bless and heal her as she recovers.

Carson and Clara in the ICU post surgery----our 2 tumor kids. He was a great distraction for us today.

The long road that remains will continue to test and try us, but experiences like this certainly help us to know that we are not alone. In addition to countless friends, family members and complete strangers, the Lord has strengthened and comforted us, helping us to know of His love for us and His knowledge of what is best. He knows what we need more than we do and His timing is always right. We continue to pray for understanding and for patience as we wait on the Lord to heal Clara as only He can.

Saturday, September 3, 2011

We met with the surgeon yesterday after getting notice on Thursday afternoon that she was scheduled for surgery on the 7th. We were surprised they wanted to operate since the tumor had not shrunk. Yesterday, we asked the surgeon why they are moving forward despite lack of progress in shrinking the tumor, he simply stated, "We need to get it out of there." We totally agree! It is our hope that the mass is dead tumor and there are no active cells remaining. So, at 8:30 am Clara will go in for surgery to get that monster out of her abdomen. There are lots of critical arteries and vital organs involved so we will pray for the divine guidance of the surgeons' hands. We feel at peace and know the Lord is, as her surgeon acknowledged, the greater physician. Assuming she is able recover from surgery well enough, chemo round six will begin 12-14 days post surgery. After she recovers from that round we will head to Seattle for transplant about 14 days later. We are grateful for your continued prayers offered on behalf of Clara and our family. Thank you from all of us.